Flossie

Your Replies

  • September 6, 2006 at 2:54 pm

    Pardon me for slipping over from the CIDP forum but I only just now discovered that my directions to favorite websites have been made difficult to use.

    I am so annoyed that we cannot send folks directly to web sites with useful and correct information relating to a CIDP or GBS diagnosis. Yes, the newbies can type in the address or even cut and paste – but does anyone remember how very difficult it was to type without error when your hands were weak and twitchy? If the admin doesn’t understand, then what chance is there for us expect consideration from the real world?

    Also, because I was already upset, I interpreted the admin’s answer to be blaming us, the forum members in general, for the actions of a person who obviously came here just to do harm. How in the world is that my fault? I work hard to find the right sites to send people to. Why make it hard on the newbies? Surely there is a techie answer to this problem that is less draconian.

    I would have hoped that these forums were considered an important contribution for and from the victims of GBSD/CIDP – but obviously we are just a nuisance.

    I am in such a snit I am rethinking my United Way contribution.
    Flossie

    August 16, 2006 at 2:12 pm

    Ericc,

    I am very interested in your research. Could you post one of the web sites you consider worth reading?

    My neurologist has said multiple times that I can take as much Benedryl as I want to treat my ridiculous over reaction to mosquito bites. My family doctor has recommended it as a sleep aid. Now my dermatologist has me taking a Claritin every single day to try and keep down my bite reactions.

    How awful if I have been hampering my CIDP recovery.
    Flossie

    July 30, 2006 at 2:41 pm

    Hi Cheryl,

    For pain during the day I take neurontin – and this is usually enough for getting through the night too. However for those occasions when I am in too much pain to sleep I have a prescription for Pamelor (Nortriptylin generic). Wowser- those little pills make me groggy the whole next day so I only take them when I am on the verge of tears.

    If it is “just” the “fidgets” (what an ineffective word to describe the tossing, turning, kicking, irritation) then I sometimes just get up and wait for exhaustion regardless of what time the clock says it is. I’d rather be reading than flipping around in bed. Other times rubbing my feet with emu oil is just soothing enough to tip me over into sleep.

    I am a nutritional supplement believer so I also take an extra Essential Fatty Acid (fish oil) pill and more antioxidants on the bad nights.

    I would like to hear from folks about the best mattress. I would love to know that I could look forward to falling asleep every night without more drugs.

    Flossie

    July 30, 2006 at 2:10 pm

    Hi John,

    How much prednisone is your friend taking? What side effects is he suffering from?

    I have been taking varying doses of prednisone since I was diagnosed with CIDP in 2000. My neurologist and I try to reduce the dosage – but my symptoms get much worse when I get below 15 mg prednisone ever other day. Also, I have to seriously increase the dosage when I catch a cold – and then reduce it on the same slow schedule again and again. (Sigh – moment of self pity.) My goal is 15 mg every other day to keep the recurring damage of my myelin from the CIDP under control and yet not be in serious danger fron the prednisone itself.

    Here is a site with excellent information on prednisone. It may make you feel better about your friend’s use of prednisone. Remember that not all patients get all side effects.
    (Link deleted by administration)

    There is more good info on the sites listed at this thread.
    (Link deleted by administration)

    It takes about three years for the average healthy body to completely replace the miles and miles of myelin – assuming the CIDP is absolutely gone. If your friend thinks he has completely recovered from CIDP perhaps the doctor could do another spinal tap and EMG to check. There have been folks who have been able to stop prednisone.

    Your fears of prednisone need to be balanced against the actual side effects your friend has or the possibility of another CIDP attack and the expense and inconvenience of other treatments.

    Flossie

    July 27, 2006 at 12:50 pm

    Blu,

    So sorry to hear of your emergency. Sending prayers for your speedy recovery.

    Hugs,
    Flossie

    May 30, 2006 at 3:23 pm

    Hi Kelly,

    I know you are frightened of letting your daughter take prednisone – but from my personal experience no natural anti inflammatory will give her the relief that comes from an immunosuppressant. After all, CIDP is not simply an inflammatory process; it is an auto immune disease.

    Yes, prednisone has a scary reputation but not every patient gets every side effect. And you might be lucky enough to have this simple pill stop the CIDP from constantly stripping the myelin from the nerves. Even though the high dose required at first had its “icky” moments, I can honestly say I was amazed at the pain releif. Once the auto immune attack has been subdued the healing can begin. With proper attention, low dose prednisone relief can be maintained for years if necessary.

    There is more prednisone info in the thread about “CIDP reference pages”. Here is my favorite page about using prednisone:
    [url]http://www.classkids.org/library/pred.htm[/url]

    You will still want to investigate how a healthy diet and possible nutritional supplements will promote the best possible outcome. Do not just start using herbals and high potency vitamins without doing proper research. You could harm your daughter. Try to find a licensed natural pharmacist to help you.

    I have spent years looking for a “natural” magic bullet to vanquish my CIDP . Unfortunately I have not found it yet.
    Flossie

    May 30, 2006 at 2:48 pm

    Hi Norbert,

    Supplements are indeed costly – but since you are careful to eat a healthy diet perhaps you don’t truly need them.

    Supplements are meant to fill in any gaps in “building blocks” for the body to repair itself. I take prednisone long term so I need to replace a lot of things that the medicine leeches from my body. From my own experience I know which pills make me feel better. There are other supplements I tried that did not seem to make any difference in my perception of my health.

    I do not know what specific nutritional toll your heart disease and /or diabetes takes on your body. That’s where your personal research should begin. Since you don’t eat red meat I hope you are careful to get enough protein. It sounds like your body is working hard to repair damage on a lot of fronts.

    I do think everyone needs to take a good quality multi vitamin every day. A heat pressed pill from a reputable company is much better than none at all. Your B pill replaces the potency lost in manufacturing.

    High dose ALA is used in europe to safely treat diabetic pain so perhaps that could be on your short list as well. Even though your diet is high in antioxidants from veggies, pills supply more of any nutrient than you could ingest normally through food. Sufficient ALA (100 mg a day) will allow all the antioxidants you eat to be used most efficiently.

    I personally find the MSM and the fish oil pills to be important for pain and strength.

    CQ 10 is used by every cell for maximum efficiency and often recommended to heart patients. I think it helps with my CIDP weakness – but I too have considered dropping it from my program because of cost.

    Good quality supplements from reputable suppliers are available at places like Costco. (That’s where Consumer’s Report magazine found the best Omega 3 fish oil pills.) Walmart carries supplements – although you need to be careful to read the labels; some of them are less expensive because they are less potent. Do your research about manufacturing companies on the net so you can buy with confidence at discount prices.

    Naturally with your diabetes and heart troubles you need to be very careful about playing with your body at the cellular level.

    Keep eating healthy!

    Flossie

    May 20, 2006 at 3:34 pm

    Thinking outside the box:

    CIDP affects each patient differently. If you have a slow onset CIDP it is possible that your body is very depleted in the building blocks necessary to repair your myelin. I think some unorthodox experimentation with supplements might be necessary – to augment, not substitute the traditional approaches.

    Always check with your neurologist before you play with herbal remedies. (Our own Doctor David does not think supplements and vitamins are a good idea.) Supplements – especially herbs – are not benign. Do your research for your own particular symptoms, avoid over dosing, avoid toxic prescription drug interactions and purchase only from a quality supplier. You are responsible for taking care of your health – but only you truly knows what it feels like inside there so do look into all possiblities.

    Miracles don’t happen in the first week of course – but I think you’ll notice a difference within the first few weeks. (In addition, think “happy thoughts” about learning meditation type breathing exercises to get you through the tough moments.) You’ll still have CIDP and need your prescriptions but hopefully you will feel stronger and have less pain.

    I am a huge convert to using antioxidants to combat oxidative stress. That’s a lot more than just vitamin C. ( Eat brocolli !!)There’s a whole integrated system that repairs tissue. I am constantly tweaking my own supplement package to deal with my specific nerve damage.

    For instance, I found a tremendous difference in pain level and sleep patterns when I added grape seed extract to the more publicized antioxidants. On the other hand, GSE did not do a thing for an email friend with CIDP. This is a highly individualized process. ( Another example is my friend with arthritis who noticed immediate symptom relief when she started taking MSM and ALA. However she can’t tolerate the magic food brocolli.)

    Take your clues from your own body and symptoms. These will change over time so be prepared to tweak your supplements. You cannot direct certain molecules do do certain tasks of course – but you can supply the necessary materials for your body to work with. The worst you will do is flush very expensive pee down the toilet.

    Utilize a “licensed natural pharmacist” if you find one you like. He has the training to start your program (I don’t believe in reinventing the wheel). Later as you do more reading you will feel confident to adjust and experiment on your own. Always remember that no single supplement is a magic bullet for anyone. (Do not go to a health food store. Ordinary pharmacists are not usually specially trained to help you either.) If you carefully read the literature that is available on the various prescriptions then you can avoid any possible “toxic” combinations with the vitamins.

    If you are already eating a sensible healthy diet then I doubt you need to alter it drastically for your CIDP. You do need lots of protein. Do try to avoid the “whites” – sugar, salt , fat. Supplements are not substitutes for food; they are meant to provide the body with extra nutrients to address specific needs.

    I do realize that it is a leap of faith to think that nutrients might be important like prescription drugs – but even medical schools are beginning to incorporate this idea.

    Flossie

    May 20, 2006 at 2:04 pm

    I have been diagnosed with CIDP since 2000. I have only been treated with prednisone (and neurontin for pain).

    When you are first diagnosed one is naturally and correctly disturbed by the possible side effects of long term steroid treatment. Try to remember that not every one will get every side effect. Prednisone is cheap and works for many CIDP patients.

    Here are some reference pages to help you weigh the pros and cons with your neurologist.

    [url]http://www.gihealth.com/html/education/drugs/prednisone.html[/url]
    My favorite page of prednisone information

    [url]http://www.classkids.org/library/pred.htm[/url]
    A very good explanation of side effects

    [url]http://www.aafp.org/afp/980800ap/zoorob.html[/url]
    How doctors decide if prednisone is safe

    [url]http://www.medsafe.govt.nz/Profs/Datasheet/a/Apoprednisonetab.htm[/url]
    A technical page from NZ

    [url]http://www.emedicine.com/med/topic3558.htm[/url]
    An excellent discussion of immunosuppressants in general

    [url]http://www.neuro.wustl.edu/neuromuscular/mtime/immunerx.html[/url]
    More on immunosuppressants in general

    [url]http://www.rxlist.com/[/url]
    A nice resource for drugs and interactions

    May 11, 2006 at 5:18 pm

    I added myself to the map.

    Remember Rocker’s great idea that the Foundation make a forum based on location? Then folks could look up resources by state or region. It would not be a very busy forum; but it sure would be a great help to the newly diagnosed.

    Sigh – so much good information lost on the old forums. But the search feature of this new system seems a lot better than the old one.

    Flossie

    May 11, 2006 at 5:05 pm

    Thanks again for the info about the “remember me” button.

    I did think it was humorous that when the system wouldn’t let me post it sent me to an address for help from the administrator. And that address was rejected as a permanent error.

    After waiting all this time for the forums to be up again it sure would have been nice to have the bugs worked out – and more than one forum. It must be hard for the newbies to wade through all the social posts mixed in with the GBS mixed in with the CIDP.

    Thanks for the helpful responses,
    Flossie

    May 10, 2006 at 9:02 pm

    Thanks to everybody!!!

    I have checked the “remember me” button and expect all my toubles to be over.

    Slow but happy,
    Flossie

    May 10, 2006 at 3:38 pm

    Kathryn,

    Argh. I wrote you a PM but the new system ate it. Sigh. I apologise to the rest of the forum for posting a brand name.

    My antioxidant combination pill is called “Super 10 Antioxidant” By “Country Life” ([url]www.country-life.com)[/url]. It is available in some health food stores but I purchase mine online.

    Remember to be super careful of using supplements with your diabetes and other medications. My friend with diabetes had a dentist prescribe high doses of Vit. C and it really messed her up. Not all health professionals realise how delicate a balance you need to keep.

    I am a big pill popper – 10 a day. I believe my body needs a variety of ammunition to fight my CIDP. I hope you are at least taking a good quality multi vitamin. No OTC is going to give you the pain control of a prescription – but a little relief is better than nothing.

    Take care,
    Flossie

    Sorry I couldn’t figure out the PM system. It refused to recognise my log in – after I write the letter. Sigh.

    May 10, 2006 at 8:46 am

    Hi Kathryn,

    I hope your doctors can find a prescription drug to help with your pain. Your drug allergies and additional health problems sure make you a challenging patient.

    Ask your diabetes doctor if it is okay for you to take Alpha Lipoic Acid. ALA is used in Europe to fight diabetic neuropathic pain. Sometimes the supplement MSM is helpful with pain too. Fish oil capsules do not fight neuropathic pain but do help with general inflamation. Perhaps additional antioxidants would be helpful – but don’t go overboard on any one such as vitamin C. (PM me if you want the brand name of the antioxidant combination pill I use.) Of course your system is too fragile to experiment with supplements without input from a professional.

    Try rubbing in ostrich oil for temporary relief.

    Much sympathy in your search for comfort,
    Flossie

    May 10, 2006 at 8:45 am

    Hi Kathryn,

    I hope your doctors can find a prescription drug to help with your pain. Your drug allergies and additional health problems sure make you a challenging patient.

    Ask your diabetes doctor if it is okay for you to take Alpha Lipoic Acid. ALA is used in Europe to fight diabetic neuropathic pain. Sometimes the supplement MSM is helpful with pain too. Fish oil capsules do not fight neuropathic pain but do help with general inflamation. Perhaps additional antioxidants would be helpful – but don’t go overboard on any one such as vitamin C. (PM me if you want the brand name of the antioxidant combination pill I use.) Of course your system is too fragile to experiment with supplements without input from a professional.

    Try rubbing in ostrich oil for temporary relief.

    Much sympathy in your search for comfort,
    Flossie